Wednesday, March 18, 2009

Somali Autism-Cluster Scare Has Worrisome Fallout

In my last post, I focused on the technical details of disease clusters, how they are studied, and the particulars of the autism clusters in Stockholm and Minneapolis. Now, with this post, I'd like to concentrate on some of the more human aspects of these stories.

Autism is not very well-understood by anybody, but it's an especially foreign concept to a lot of the Somali immigrant families profiled in the news stories.

[M]any Somali parents are baffled and scared.

"It's beyond denial," said Hassan Samantar, a parent advocate at the Pacer Center for disabled children. "There was no word for this in Somali. We've seen Down syndrome and schizophrenia, but loosely termed --- our word is more like 'crazy.' People are calling it 'otismo' or 'the American disease.' And some are saying it's something you did or something your parents did, and the curse is catching up with you."

Many Somali parents here do not read English or watch American television, he said, so they first hear of autism only when a pediatrician suggests testing a child.

Because neither autism in general nor the unusually high prevalence of autism in some immigrant communities has yet been very well explained --- there are many competing, potentially overlapping hypotheses of how autism develops, with only part of the picture filled in with any confidence --- there's a gap in the public discourse about autism that certain less-than-scrupulous parties are eager to step in and fill.

Antivaccine activists are campaigning among [Somali immigrants in Minneapolis], which worries public health officials, especially because some families go back and forth to Somalia, where measles is still a significant cause of childhood death, according to Unicef....In November, J. B. Handley, a founder of Generation Rescue, which advocates treating autistic children with wheat- and dairy-free diets, vitamins and chelation to remove mercury, wrote an open letter to "Courageous Somali Parents."

He warned them not to trust the state health department and suggested they slow down their children's shots and get exemptions to school vaccination requirements. He also offered to pay for some to attend an antivaccine conference.

The appeal has had an effect. Many parents, including Ayub's, now say their children's autism began after seizures that started after they got shots.

(As an aside, I'd like to point out how misleading it is for the Times to list a highly dangerous procedure like chelation alongside relatively benign alternative therapies like vitamins and special diets. Vitamins and special diets might not do much, but people don't die from them).Fear of vaccination is also growing more common among Somalis in Stockholm:

Idiopathic autism is a challenging condition for parents. Along with genetic aspects, several other explanations have been discussed, including the influence of diet, intestinal inflammation, and vaccination. In a geographical area of Stockholm, with a relatively large Somali immigrant population, many parents of Somali children have refrained from letting their child be given the measles, mumps and rubella (MMR) vaccine because of the controversial (and now refuted) link between MMR vaccination and autism. In that specific area of Stockholm, vaccination frequency was 69.5% in 2005, and 71% in 2006, in comparison to about 95% in most other areas in Stockholm. In this area in the northwestern part of Stockholm, parental concern about the risk of vaccination coincides with concerns from teachers and autism assessment teams about a seemingly higher than expected proportion of Somali children having autism.

(Quoted from the Introduction of Barnevik-Olsson, Gillberg and Fernell, 2008).

While the solitary crank who refuses to vaccinate has been annoying people as long as vaccines have existed, it's more worrying when groups of people refuse to vaccinate. For one person, or a few who are isolated from each other, they can at least get by with herd immunity and never even come into contact with the pathogen. But if you have an enclave of people without immunity, you run the risk that the disease might become endemic among them.

These Somali immigrant communities are at an additional risk because of the frequency of trips made to and from Somalia, where measles is still common.

In a climate of fear, people look for certainty. The lack of clear, easy answers about autism from the scientific community has driven many of the more fearful parents into the arms of people who do have easy answers, even when those answers are false and potentially very dangerous.Both the purveyors of deceptively simple answers and those in the media who create that climate of fear are wrong.

6 comments:

Hi Lindsay,Well, I stumbled on your corner on Friday night.Such a lot of thought provoking researched material, but not the time to read and 'inwardly digest' but I shall certainly be returning, with my 'morning brain'!Glad to have found this ...serendipity and technology....Chris

I'm not sure if I agree on "relatively" benign. Of course a vitamin pill is not as harmful as chelation, but if you consider that these children often have seizures, or possible food allergies, then any attempt at self-medication is dangerous.(I'm probably splitting hair.)

Of course a vitamin pill is not as harmful as chelation, but if you consider that these children often have seizures, or possible food allergies, then any attempt at self-medication is dangerous.

Oh, yes, agreed. I was just making the point that, while all of these unproven, alternative remedies can be dangerous when they're taken instead of a medication that's needed (say, anticonvulsants to control seizures), some of them are worse because, in addition to being ineffective for treating whatever they're supposed to treat, they also do harm. I'd put chelation in the second category.

I found most of the articles in newspapers on this subject to be rather well written. I have no doubt that genetic disposition, a major change in diet, migration stresses, prior diseases, poorer nutrient absorption due to alterations in the alimentary cannel, lessened exposure to sunlight, low vitamin D intake and regulation (and probably calcium too), too many vaccines given at once, the vaccines themselves, the thimerosal in vaccines which contains mercurial compounds, other metal toxicities, glutathione concentrations, and overall body health, other factors that I might have neglected to mention but the articles covered, all contribute to greater or lesser degrees to autism spectrum disorders in children.

But I found no articles that linked autism spectrum disorders with anti-epileptic and anti-convulsant pharmaceutical products. Sweden has extensively and aggressively treated, especially, Ugandans for epilepsy. I found one well written scientific study that did link autism spectrum disorders and anti-epileptic drugs. Three anti-convulsant drugs that I came across were Valproic acid, Carbamazepine, and phenytocin.

If you read tropical medicine journals, you will find that in many parts of the world, hospitalizations due to neurological problems exceed 30%, of which epilepsy is the number one cause. Many mosquito borne diseases cause neurological problems. Science, medicine and technology are all double edged swords. They should all be taken with a dose of wisdom, limits, communication and decorum.

Other migrant groups have had similar problems. People from the Indian sub-continent living in certain parts of Britain suffered from very high rates of rickets. This was thought to be from lessened exposure to sunlight, lowered intake and regulation of calcium and vitamin D. In the 1980’s it was widely publicized that even Prince Charles campaigned to better their health.

As I prepared this draft, a randomly selected radio announced it was broadcasting from the city of Detroit. There was an announcement that today was Purple day. I think this has something to do with preventing epilepsy. Later, Jenny from the Michigan Neurologists asked the audience to bring children 12 years and above for a new drug testing for the treatment of epilepsy. It did not matter if they already had been on three other epilepsy drugs.

I found most of the articles in newspapers on this subject to be rather well written. I have no doubt that genetic disposition, a major change in diet, migration stresses, prior diseases, poorer nutrient absorption due to alterations in the alimentary cannel, lessened exposure to sunlight, low vitamin D intake and regulation (and probably calcium too), too many vaccines given at once, the vaccines themselves, the thimerosal in vaccines which contains mercurial compounds, other metal toxicities, glutathione concentrations, and overall body health, other factors that I might have neglected to mention but the articles covered, all contribute to greater or lesser degrees to autism spectrum disorders in children.

But I found no articles that linked autism spectrum disorders with anti-epileptic and anti-convulsant pharmaceutical products. Sweden has extensively and aggressively treated, especially, Ugandans for epilepsy. I found one well written scientific study that did link autism spectrum disorders and anti-epileptic drugs. Three anti-convulsant drugs that I came across were Valproic acid, Carbamazepine, and phenytocin.

If you read tropical medicine journals, you will find that in many parts of the world, hospitalizations due to neurological problems exceed 30%, of which epilepsy is the number one cause. Many mosquito borne diseases cause neurological problems. Science, medicine and technology are all double edged swords. They should all be taken with a dose of wisdom, limits, communication and decorum.

Other migrant groups have had similar problems. People from the Indian sub-continent living in certain parts of Britain suffered from very high rates of rickets. This was thought to be from lessened exposure to sunlight, lowered intake and regulation of calcium and vitamin D. In the 1980’s it was widely publicized that even Prince Charles campaigned to better their health.

As I prepared this draft, a randomly selected radio announced it was broadcasting from the city of Detroit. There was an announcement that today was Purple day. I think this has something to do with preventing epilepsy. Later, Jenny from the Michigan Neurologists asked the audience to bring children 12 years and above for a new drug testing for the treatment of epilepsy. It did not matter if they already had been on three other epilepsy drugs.

A Portrait of the Autist

I'm a recent KU graduate with degrees in biochemistry and English lit. I'm also on the autism spectrum, having been diagnosed with PDD-NOS at age 5. It's quite likely that, were I to be seen now, I'd be diagnosed with Asperger syndrome.
I write about a lot of things, which include but are not limited to: autism research, psychology, neuroscience, feminism, autism advocacy/neurodiversity, autism in literature, and broad, sweeping cultural critique. I also draw, paint and take the occasional random picture.
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Recommended Reading

These are books I've read that I thought worthy of recommendation; it's not meant to be an exhaustive reading list in any topic. I will add to it as I discover more books I think people need to read.

Because I believe that true freedom of thought is incompatible with a world where all our books, opinions, news and entertainment comes from the same handful of corporations, I have linked to independent bookstores whenever I could.